Constructive Privacy for Shared Genetic Data

International audienceThe need for the sharing of genetic data, for instance, in genome-wide association studies is incessantly growing. In parallel, serious privacy concerns rise from a multi-party access to genetic information. Several techniques , such as encryption, have been proposed as solutions for the privacy-preserving sharing of genomes. However, existing programming means do not support guarantees for privacy properties and the performance optimization of genetic applications involving shared data. We propose two contributions in this context. First, we present new cloud-based architectures for cloud-based genetic applications that are motivated by the needs of geneticians. Second, we propose a model and implementation for the composition of watermarking with encryption, fragmentation, and client-side computations for the secure and privacy-preserving sharing of genetic data in the cloud

Challenges of web-based personal genomic data sharing

In order to study the relationship between genes and diseases, the increasing availability and sharing of phenotypic and genotypic data have been promoted as an imperative within the scientific community. In parallel with data sharing practices by clinicians and researchers, recent initiatives have been observed in which individuals are sharing personal genomic data. The involvement of individuals in such initiatives is facilitated by the increased accessibility of personal genomic data, offered by private test providers along with availability of online networks. Personal webpages and on-line data sharing platforms such as Consent to Research (Portable Legal Consent), Free the Data, and Genomes Unzipped are being utilized to host and share genotypes, electronic health records and family history uploaded by individuals. Although personal genomic data sharing initiatives vary in nature, the emphasis on the individuals’ control on their data in order to benefit research and ultimately health care has seen as a key theme across these initiatives. In line with the growing practice of personal genomic data sharing, this paper aims to shed light on the potential challenges surrounding these initiatives. As in the course of these initiatives individuals are solicited to individually balance the risks and benefits of sharing their genomic data, their awareness of the implications of personal genomic data sharing for themselves and their family members is a necessity. Furthermore, given the sensitivity of genomic data and the controversies around their complete de-identifiability, potential privacy risks and harms originating from unintended uses of data have to be taken into consideration

Disposition toward privacy and information disclosure in the context of emerging health technologies.

ObjectiveWe sought to present a model of privacy disposition and its development based on qualitative research on privacy considerations in the context of emerging health technologies.Materials and methodsWe spoke to 108 participants across 44 interviews and 9 focus groups to understand the range of ways in which individuals value (or do not value) control over their health information. Transcripts of interviews and focus groups were systematically coded and analyzed in ATLAS.ti for privacy considerations expressed by respondents.ResultsThree key findings from the qualitative data suggest a model of privacy disposition. First, participants described privacy related behavior as both contextual and habitual. Second, there are motivations for and deterrents to sharing personal information that do not fit into the analytical categories of risks and benefits. Third, philosophies of privacy, often described as attitudes toward privacy, should be classified as a subtype of motivation or deterrent.DiscussionThis qualitative analysis suggests a simple but potentially powerful conceptual model of privacy disposition, or what makes a person more or less private. Components of privacy disposition are identifiable and measurable through self-report and therefore amenable to operationalization and further quantitative inquiry.ConclusionsWe propose this model as the basis for a psychometric instrument that can be used to identify types of privacy dispositions, with potential applications in research, clinical practice, system design, and policy

Genetic Testing When There is a Mix of Compulsory and Voluntary Health Insurance

Genetic insurance can deal with the negative effects of genetic testing on insurance coverage and income distribution when the insurer has access to information about test status. Hence, efficient testing is promoted. When information about prevention and test status is private, two types of social inefficiencies may occur; genetic testing may not be done when it is socially efficient and genetic testing may be done although it is socially inefficient. The first type of inefficiency is shown to be likely for consumers with compulsory insurance only, while the second type of inefficiency is more likely for those who have supplemented the compulsory insurance with substantial voluntary insurance. This second type of inefficiency is more important the less effective prevention is. It is therefore a puzzle that many countries have imposed strict regulation on the genetic information insurers have access to. A reason may be that genetic insurance is not yet a political issue, and the advantage of shared genetic information is therefore not transparent.Genetic testing insurance, private information, compulsory/voluntary mix

Siberian Tigers and Exotic Birds: Ronald Dworkin\u27s Map of the Sacred

At its most abstract, Life\u27s Dominion: An Argument about Abortion, Euthanasia, and Individual Freedom is a meditation on the nature of individual freedom. However, as author Ronald Dworkin explains at the end of Chapter One, he believes in doing philosophy in much the same way common law jurists believe in doing law-from the inside out-that is, by starting with a concrete problem and then proceeding to the more general questions raised by that problem. According to Dworkin, this generates a theory that is appropriately tailored to the issue, Savile Row so to speak, rather than Seventh Avenue, and thus a theory that is more likely to improve the quality of public debate. The crucible for Dworkin\u27s theory in this instance is the debate over abortion and constitutional rights. Although euthanasia is discussed in the last two chapters of the book, it is not as comprehensively explored as the abortion issue. Indeed, it is plausible to read the book as an elaborate justification of the U.S. Supreme Court decision on abortion rights, Roe v. Wade, which Dworkin suggests may be the most famous case in America, if not the world. The majority in Roe v. Wade found that although women\u27s constitutional privacy rights entitle them to choose to terminate a pregnancy, those rights diminish as their pregnancies progress in accordance with a trimester framework

Legal Solutions in Health Reform: Privacy and Health Information Technology

Identifies gaps in the federal health privacy standard and proposes options for strengthening the legal framework for privacy protections in order to build public trust in health information technology. Presents arguments for and against each option

Privacy and Health Information Technology

The increased use of health information technology (health IT) is a common element of nearly every health reform proposal because it has the potential to decrease costs, improve health outcomes, coordinate care, and improve public health. However, it raises concerns about security and privacy of medical information. This paper examines some of the “gaps” in privacy protections that arise out of the current federal health privacy standard, the Health Insurance Portability and Accountability (HIPAA) Privacy Rule, the main federal law which governs the use and disclosure of health information. Additionally, it puts forth a range of possible solutions, accompanied by arguments for and against each. The solutions provide some options for strengthening the current legal framework of privacy protections in order to build public trust in health IT and facilitate its use for health reform. The American Recovery and Reinvestment Act (ARRA) enacted in February 2009 includes a number of changes to HIPAA and its regulations, and those changes are clearly noted among the list of solutions (and ARRA is indicated in the Executive Summary and paper where the Act has a relevant provision)